Parents of Micro Preemies - Page 2 - Mothering Forums

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Old 08-24-2006, 01:22 AM - Thread Starter
 
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. I pump faithfully and four weeks later pump about 650 CCs per day - is this normal? Charlotte is up to full feeds and weighs 1lb 14.9oz. - can't wait for 2 lbs! She had a level II IVH that appears to have resolved itself. I think the next big test is for her eyes. What should we expect with that? I'm so scared about her future health!

By the way, I feel terrible guilt about not keeping her in longer. I don't think anyone should feel guilty about visiting the NICU only once per day. I can only make it once per day - we live almost an hour away!
I understand your entire post. What is full feeds at this point? MAggie didnt get but 1cc until she was about 3-4 weeks old. I pumped 4-5 5 oz bottles everyday the first month. Then it started to go down. Be careful with that btw.

They check all the babies under 1500 grams eyes. They will keep it up for at least 6-9 mos and that is if she is developing normal. They really need to keep an eye on her since she was on the high freq vent. MAggie goes on Monday for her eye check.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 08-24-2006, 11:41 PM
 
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I'm excited to have found this thread! Would you believe I am another Betsy in NY with micropreemie twins? (Hi BetsyNY! Nice to see you here, too! )

Lillian and Kate were born at 29 weeks GA. Lilly was 1400 grams and Kate was 1280. Both of them had PDAs that resolved after the 2nd dose of indomethecin. A few As and Bs but mostly desats from both of them. Lilly was on CPAP for 10 days I think, then nasal cannula, and come home free of assistance after 63 days in NICU. Kate was intubated for 14 days,then on CPAP and then cannula, which she came home with after 65 days in NICU and stayed on the O2 for nearly 2 months longer. That was rough but we managed it. Both had reflux which they seem to have outgrown now.

Now they are 7 months old and super-healthy. For their adjusted age they are in the 90th and 75th %tiles, as of last month. When we are out and people ask how old they are, no one says "My, they're small!" anymore. They actually tell me they look so big and strong, and when they ask their birthweights I watch the shock on their faces.

Other than the prematurity, the biggest disappointment was my lack of success with nursing the 2 of them. I started pumping right away, and we did nurse a bit in NICU, but when we came home it got really difficult with the O2 and reflux, exhaustion, thrush, bad latches, etc. I wasn't able to get them enough time on the breast in addition to feeding them EBM and pumping, so now I am exclusively pumping and wishing it were different. I still try sometimes to get them on the breast, but they are not interested usually.
Still, they are getting my milk and that has fattened them up to the point that they are both pushing 15 pounds (I will found out at their next check-up a week from today) so I at least feel good about that.

Betsy, mama to beautiful, strong MZ twins Lillian and Kate, born 11 weeks early on January 10, 2006.
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Old 08-25-2006, 08:24 AM
 
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so now I am exclusively pumping and wishing it were different. I still try sometimes to get them on the breast, but they are not interested usually.
Good for you for pumping, i can only imgaine it's more work for twins. I tried for 6 mths to get her to the breast, she wasn't interested at all and then when she was about 9 mths (5 1/2 adjusted) she took to the breast! We are still nursing strong today and she turns 2 in a few weeks. Just saying you never know, it can happened. If it doesn't, then you've done your best in a difficult situation


Well Megan had an EI evaluation the other day. She is no longer considered "delayed" in anything, not that i was concerned with anything anyhow. She actually was ahead in some areas even for her actual age, so way ahead for adjusted age. It was just so great to see, i was proud of my little sweetpea. I remember being told by the neonatologist when she was about 6 mths old that she most likely will be a very late walker and may have issues and here she was at 22 mths walking a balance beam I just shedded a few tears of joy for her
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Old 08-25-2006, 03:21 PM
 
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The docs have Charlotte on 17 ccs of breast milk with additional lipids and 4 packs of human milk fortifier every three hours. She has just started to develop reflux and I saw my first apnea yesterday. I now understand what "dusky" is. They also upped her caffeine dose this week so I wonder if that doesn't have something to do with the reflux.

Does anyone know the rules about glove use for nurses? I had a nurse yesterday who suctioned her WITHOUT wearning gloves! I lost it! These little babies are so prone to infection. I'm still waiting to see how the hospital will handle this beyond changing the nursing assignment.

How is Sydney doing with her CPAP?
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Old 08-25-2006, 03:35 PM
 
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I think it depends on their comfort level. Gloves are mostly to protect the nurses anyways. Nurse SHOULD wash their hands well before handling your baby. As long as the nurse washed her hands or use the gel before suctioning I wouldn't worry. Especially if she needed to suction your baby quickly to help your baby breathe. I know it's hard getting used to things in the nicu nd each nurse does things a bit different. If the glove thing bothers you you can put a note on her bedside which says "please use gloves". I hope your baby outgrows the reflux soon, we're still dealing with reflux at 6 months (3 months adjusted) and it's not easy. From my expierence the caffiene really didn't affect the reflux. I'm not sure on others experience. ALOT of preemies have reflux ust because everything is still so immature.
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Old 08-25-2006, 04:19 PM - Thread Starter
 
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I do know the caffiene has nothing to do w the reflux. But if they try to wean the caffience, it takes about 5-7 days to get it out of the babie's systems. Maggie was taken off and had apnea within days.

Our nicu did not really use glovces unless it was a planned procedure but usually the nurse washed her hands immediatly before doing anything in urgent matters

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Old 08-25-2006, 06:59 PM
 
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They very rarely used gloves in our NICU, except for like IV's, blood draws etc...

Actually my dd developed reflux due to the caffiene. They put her back on caffiene before she left to go home. They told me that it's possible she could develop reflux from it and within a few weeks she did. It went away when we took her off the caffiene. She never had reflux before that, she even had that test for reflux before she was discharged.
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Old 08-26-2006, 11:37 PM
 
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Originally Posted by sweetpeasmom
Good for you for pumping, i can only imgaine it's more work for twins. I tried for 6 mths to get her to the breast, she wasn't interested at all and then when she was about 9 mths (5 1/2 adjusted) she took to the breast! We are still nursing strong today and she turns 2 in a few weeks. Just saying you never know, it can happened. If it doesn't, then you've done your best in a difficult situation
Thanks for the kind words and inspiration! I will keep trying with them and hope for the best. It would be great to pump less. But then, my pumping time is my internet time, so at least that's the silver lining!

And congrats on your daughter's checkup! It sounds like she is doing fantastically!

Betsy, mama to beautiful, strong MZ twins Lillian and Kate, born 11 weeks early on January 10, 2006.
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Old 08-28-2006, 06:55 PM
 
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Amy-

How did Maggie's eye check go?
Charlotte had her first eye exam today - stage 1 - they told me not to worry...
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Old 08-28-2006, 07:40 PM - Thread Starter
 
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We went for the eye check today. I hate it since she has to have her eyes dilated and at least today its rainy. She is doing real well and dosent have to go back until January. The dr said she is moving along just fine. I hate having that exam done though. At least now we are used to it. Maggie oth, hates it! She is sleeping now.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 08-28-2006, 07:41 PM - Thread Starter
 
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We went for the eye check today. I hate it since she has to have her eyes dilated and at least today its rainy. She is doing real well and dosent have to go back until January. The dr said she is moving along just fine. I hate having that exam done though. At least now we are used to it. Maggie oth, hates it! She is sleeping now.

I think this is a double post oopps

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 08-29-2006, 05:03 PM
 
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It gets better when you leave the hospital with your baby.

I had twins after 8 days of inversion and Mag--27 weeks.
We lost our son to an infection and our daughter was in the NICU for 80+ days.
Sophia did not really grow until after he second birthday and then went from a small size 12mo. to a 2T in about 6-8 weeks.
If you have not been here you can not know what it is like and the roller coaster you go through.
We have people we met in the NICU we still have a play group with and probably will know for a long time.
Do and act however you feel is right for you, do not let anyone tell you what is best. You will know.
I am in my 30th week with a single baby and with a new and better Peri and OB we are all hopeful to get to 34+ weeks.
One other word of advice don't feel bad telling people they don't know what they are talking about. I still feel annoyed by comments people made and wished I had told them what I was really feeling. It may not always be polite, but you will feel better and in this situation that is the most important thing, so you can be 100% for your baby.

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Old 08-29-2006, 05:41 PM - Thread Starter
 
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hi vicki,
agree w all you said!

We have a NICU dinner tonight at our house. I was just talking to one of the moms and we got going on a vent! She is mad that her little guy is still in nb size and people make comments. I told her not to worry about it and just go by how he is doing.


I must say some of the stupidiest things ever said to me had been said in the last 6 mos since Maggie was born. I really just think people do not know what to say or do and again unless you have lived it, you have no clue. But again its the same for parents of a sick child, no one who has not lived it has a clue.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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